Tuesday, December 21, 2010

Lil Star

I had one of those conversations today that makes you remember just how precious and short life really is. It was few years ago, soon after I met Big, that life became very difficult for me. Not long diagnosed I was very unwell and only just learning how to cope with EDS, my already difficult family situation broke down completely, and I was deeply in debt. As they have a habit of doing, things reached a breaking point where I simply didn't know how I was going to manage, I was so badly in debt I couldn't afford basics like food or heating, and in utter desperation I wrote asking for advice on a support group. Although lots of people read my post, only one or two replied, most I think not knowing what to say, and being intimidated by the situation I was in.

One person however went to huge lengths to help me. She spent hours tracking down an email address and then phone number for me, having realised from what I'd said just how close to breaking I really was. Later that same day she phoned me, this woman I'd never met, and never spoken to and spent hours on the phone, listening while I talked through how difficult things were and trying to find ways to help. She lived hundreds of miles away from me, but discovered her own parents lived within half an hours drive of me. Within days her elderly parents were at my house with a boot full of shopping they'd bought for me. She even gave me some of her own money, a very small amount, but at the time a fortune to me. She really is a Star this lady.

Over these past three years life has changed a great deal from the time I thought I wouldn't get through. Thanks to Star I found out I could get help with my debt problem and starting buying food instead of giving everything to the bank. I made sure that I paid it forward and when the opportunity arose I gave someone else in crisis a small amount of money just as had been done for me. I've managed to turn my life around, supported all the way by Star.

As my life has improved, things have gone steadily downhill for Star. She's been really poorly over the past couple of years. At first she had an appalling and disinterested GP who ignored her urgent symptoms for about 12 months, with that attitude so familiar to those of us with EDS, that there was nothing wrong, like she was still attention seeking despite her own diagnosis by world respected experts. Fortunately a new and excellent GP came along, and since that time Star has been cared for by the very best medical teams, although for months despite extensive tests none of the doctors had could find what was wrong, just knowing that she was very unwell and losing weight rapidly. Eventually they decided she had endocarditis, probably caused by some dental treatment a year or so previously when she'd not been given any prophylactic antibiotics. Star also has EDS, and like many people with EDS has mitral valve prolapse, usually nothing much to worry about but she's been unlucky. Star remained in hospital for months, being treated with all different kinds of antibiotics as she had various allergic reactions and still not getting better. Eventually the doctors decided that the infection in her heart couldn't be the primary infection as she just wasn't getting better and finally found out she had biliary sepsis. They suspect this has been caused by the internal laxity of her bile ducts. After months of IV antibiotic treatment Star was well enough to have an operation to put a tube into her stomach so that she'd be fed through a peg tube at night and could go home.

Star had just been told that she might need a liver transplant when she was diagnosed with breast cancer.

She's had her mastectomy and come through that much better than anyone expected. Today she read me the letters her doctors have copied her into putting the situation into black and white. The cancer had already spread to 4 out of the 9 lymph glands they biopsied. It is not responsive to Herceptin or any hormonal kind of treatments. She has a 31% chance of survival in 10 years, which increases to 54% if she has chemotherapy. Problem is that she is already so unwell that chemotherapy may well kill her. So could the biliary sepsis mind.

There is a plan in place, proving how superb the NHS can be when it works well, teams of consultants at different hospitals working together to plan an attempt to manage chemotherapy and treatment for biliary sepsis at the same time, organising plans for A&E admission via ambulance and immediate transfer to specialist hospital should her temperature rise by a degree and not drop within an hour. Professors talking to each other in an attempts to find some method of treatment that may help. There is, not surprisingly, no precedent to be found for giving chemotherapy to a patient with EDS, a peg tube and existing biliary sepsis.

Star is 47. Her youngest children are 13 and 16. Today we talked about whether she would see Christmas.

Life really is too short, we all know that, but I know that if I can live mine taking a leaf out of Star's book, always going that extra distance to help others, paying it forward, with a wicked laugh and a potty mouth, well, then it'll be a life lived half as well as hers has been so far.

2 comments:

You yourself becoming a shining star yourself working so relentlessly on behalf of people like me too overwhelmed by the proposed changes to dla etc. to know where to start. Despite your pain. So I too thank Star for helping you.

I don't know what to say that would be right when reading that which you have written about Star. Why do the best people, suffer so. A timely reminder that when I bleat about my pain, I should be counting my blessings.

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